Prenatal Tests for Epileptics - Advice:

Research in OACS has shown that the following advice is not always being followed:  

 

NICE guidelines regarding epilepsy and pregnancy:

  • Women and girls with epilepsy need accurate information during pregnancy, and the possibility of status epilepticus and SUDEP (sudden Unexpected Death in Epilepsy) should be discussed with all women and girls who plan to stop AED therapy.

  •  The clinician should discuss with the woman and girl the relative benefits and risks of adjusting medication to enable her to make an informed decision. Where appropriate, the woman or girl's specialist should be consulted.

  • Women and girls with generalised tonic–clonic seizures should be informed that the fetus may be at relatively higher risk of harm during a seizure, although the absolute risk remains very low, and the level of risk may depend on seizure frequency.

  • Women and girls should be reassured that there is no evidence that focal, absence and myoclonic seizures affect the pregnancy or developing fetus adversely unless they fall and sustain an injury.

  •  Women and girls should be reassured that an increase in seizure frequency is generally unlikely in pregnancy or in the first few months after birth.

  • Generally, women and girls may be reassured that the risk of a tonic–clonic seizure during the labour and the 24 hours after birth is low (1–4%).         

  •  Women and girls with epilepsy should be informed that although they are likely to have healthy pregnancies, their risk of complications during pregnancy and labour is higher than for women and girls without epilepsy.

  • Care of pregnant women and girls should be shared between the obstetrician and the specialist.

  •  Pregnant women and girls who are taking AEDs should be offered a high-resolution ultrasound scan to screen for structural anomalies. This scan should be performed at 18–20 weeks' gestation by an appropriately trained ultrasonographer, but earlier scanning may allow major malformations to be detected sooner.

  •  The risk of seizures during labour is low, but it is sufficient to warrant the recommendation that delivery should take place in an obstetric unit with facilities for maternal and neonatal resuscitation and treating maternal seizures.

  • All children born to mothers taking enzyme-inducing AEDs should be given 1 mg of vitamin K parenterally at delivery.  (This is  because of a smal chance of fetal haemorrhage due to maternal antiepileptic treatment.  It is recommended that epileptic mothers receive vitamin K tablets throughout the month before delivery and intravenously during labour).

  •  Genetic counselling should be considered if one partner has epilepsy, particularly if the partner has idiopathic epilepsy and a positive family history of epilepsy.

  •  Although there is an increased risk of seizures in children of parents with epilepsy, children, young people and adults with epilepsy should be given information that the probability that a child will be affected is generally low. However, this will depend on the family history.

  • Advanced planning, including the development of local protocols for care, should be implemented in obstetric units that deliver babies of women and girls with epilepsy.

  • Joint epilepsy and obstetric clinics may be convenient for mothers and healthcare professionals but there is insufficient evidence to recommend their routine use.

  •  It is, however, important that there should be regular follow-up, planning of delivery, and liaison between the specialist or epilepsy team and the obstetrician or midwife.

  • Aim for seizure freedom before conception and during pregnancy (particularly for women and girls with generalised tonic–clonic seizures) but consider the risk of adverse effects of AEDs and use the lowest effective dose of each AED, avoiding polytherapy if possible.

  •  Do not routinely monitor AED levels during pregnancy. If seizures increase or are likely to increase, monitoring AED levels (particularly levels of lamotrigine and phenytoin, which may be particularly Affected in pregnancy) may be useful when making dose adjustments.

 

patient.co.uk - Antenatal and intrapartum care state:

  • Pregnant women taking AEDs should be offered a high-resolution ultrasound scan to screen for structural anomalies, performed at 18-20 weeks of gestation, but earlier scanning (11-13 weeks) may allow major malformations to be detected sooner.

  • Fetal growth should be monitored in women taking topiramate or levetiracetam.

  • All children born to mothers taking enzyme-inducing AEDs should be given 1 mg of vitamin K parenterally at delivery

  • Genetic counselling should be considered if one partner has epilepsy, particularly if the partner has idiopathic epilepsy and a positive family history of epilepsy.

  • AED levels should not be monitored routinely during pregnancy but, if seizures increase or are likely to increase, monitoring AED levels (particularly levels of lamotrigine and phenytoin, which may be particularly affected in pregnancy) may be useful when making dose adjustments.

  • Intrapartum care should include the following:

  • Women should deliver in a centre with adequate facilities for maternal and neonatal resuscitation.

    • Women should continue to take their anti-epileptic medication in labour.

    • Birthing pools are not recommended for women with epilepsy.

    • Intravenous access (in case of seizure).

    • Hyperventilation and maternal exhaustion should be avoided.

    • Generalised tonic-clonic seizures are associated with hypoxia, and continuous cardiotocography (CTG) tracing is recommended in the event of a seizure.

    • An intravenous benzodiazepine (eg lorazepam or diazepam) is recommended to terminate fitting.

    • In the event of benzodiazepine being used to terminate the seizure, loss of baseline variability of the fetal heart rate tracing can be expected for approximately one hour.

 

Unfortunately in an OACS survey found that

  • 7% were happy with their pregnancy counselling. 

  • 37% were not counselled at all

  • 44% gave no higher than 3/10 when scoring the quality of information given.

 

Antenatal tests recieved were given as:

  • Ultra sound scan    97.14%

  • A fetal anomaly scan   17.14%

  • Spina Bifida   25.71%

  • Amniocentesis   17.14% 

  • fetal echo (fetal echocardiography) scan of the heart   14.29%

  • cervical scan   14.29%

 

A scan can show:

  • Echocardiography: Congenital cardiac malformations can be detected at 18–20 weeks.

  • Hypospadias and posterior cleft palates are not reliably detectable by ultrasound scanning.

  • Amniocentesis is an increased maternal α fetoprotein concentration measured at 18 weeks may point to a NTD. If you are taking AEDs and have one disabled child, there will be a 55% likelihood of a second child having a disability.

  • Anencephaly (Anencephaly is the absence of a major portion of the brain, skull, and scalp), can be detected at 11 weeks.

  • Neural Tube Defects can be detected at about 16 to18weeks.

 

There have long been concerns regarding the tetragenic effects of anti-epileptic drugs upon the foetus. To date there is not a clear and consistent policy regarding the prenatal testing of mothers that take anti-convulsant medication.  

 

Without the prenatal tests that are potentially available it is impossible for a mother to make an informed choice as to whether or not she is able to care for a child with a disability, nor is she given the opportunity to develop the appropriate mind frame for such an experience.  The importance of patient choice in these circumstances can affect one’s life dramatically; the effects of this can reverberate throughout the social services, educational and health services in unnecessary health and educational costs. 

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